If ever Carol Gaetjens becomes unconscious with no hope of awakening, even if she could live for years in that state, she says she wants her loved ones to discontinue all forms of artificial life support.

But now there’s a catch for this churchgoing Catholic woman. U.S. bishops have decided that it is not permissible to remove a feeding tube from someone who is unconscious but not dying, except in a few circumstances.

Erica Laethem of Resurrection Health Care talks with resident physician Harjyot Sandhu during the rounds at Intensive Care Unit of the St. Mary's of Nazareth Hospital in Chicago. (Tribune photo by Zbigniew Bzdak / January 28, 2010)

People in a persistent vegetative state, the bishops say, must be given food and water indefinitely by natural or artificial means as long as they are otherwise healthy. The new directive, which is more definitive than previous church teachings, also appears to apply broadly to any patient with a chronic illness who has lost the ability to eat or drink, including victims of strokes and people with advanced dementia.

Catholic medical institutions – including 46 hospitals and 49 nursing homes in Illinois – are bound to honor the bishops’ directive, issued late last year, as they do church teachings on abortion and birth control. Officials are weighing how to interpret the guideline in various circumstances.

What happens, for example, if a patient’s advance directive, which expresses that individual’s end-of-life wishes, conflicts with a Catholic medical center’s religious obligations?

Gaetjens, 65, said she did not know of the bishops’ position until recently and finds it difficult to accept.

“It seems very authoritarian,” said the Evanston resident. “I believe people’s autonomy to make decisions about their own health care should be respected.”

The guideline addresses the cases of people like Terri Schiavo, a Catholic woman who lived in a persistent vegetative state for 15 years, without consciousness of her surroundings. In a case that inspired a national uproar, Schiavo died five years ago, after her husband won a court battle to have her feeding tube removed, over the objections of her parents.

The directive’s goal is to respect human life, but some bioethicists are skeptical.

“I think many (people) will have difficulty understanding how prolonging the life of someone in a persistent or permanent vegetative state respects the patient’s dignity,” said Dr. Joel Frader, head of academic pediatrics at Children’s Memorial Hospital in Chicago and professor of medical humanities at Northwestern University’s Feinberg School of Medicine.

Gaetjens, a hospice volunteer and instructor at Northwestern University, has thought long and hard about illness and the meaning of life after struggling with multiple sclerosis for 40 years.

She said she has told her sister and a close friend that she does not want “heroic measures” undertaken on her behalf at the end of life. But she acknowledged that she has not studied Catholic teachings on the subject or thought through all the implications of her position.

“My pleasure is in being part of the human race,” she said. “If that’s gone, if I can’t interact with other people, even if they could give me nutrition and keep me hydrated, I’m not interested in being preserved.”

Some experts are advising that a similar stance is no longer tenable for devout Catholics. Church members should steer away from advance directives that make blanket statements such as “I don’t want any tubes or lifesaving measures,” said the Rev. Tadeusz Pacholczyk, director of education for the National Catholic Bioethics Center in Philadelphia.

The church’s view is that giving food and water to a person through a feeding tube is not a medical intervention but basic care, akin to keeping the patient clean and turning him to prevent bedsores, Pacholczyk said.

Pope John Paul II articulated the principle in a 2004 speech, and the Congregation for the Doctrine of the Faith, an arm of the Vatican, expanded on it in a 2007 statement. The new guideline incorporates those positions in Directive 58 of the U.S. bishops’ Ethical and Religious Directives for Catholic Health Care Services.

There are several important exceptions. For one, if a person is actively dying of an underlying medical condition, such as advanced diabetes or cancer, inserting a feeding tube is not required.

“When a patient is drawing close to death from an underlying progressive and fatal condition, sometimes measures that provide artificial nutrition and hydration become excessively burdensome,” said Erica Laethem, a director of clinical ethics at Resurrection Health Care, Chicago’s largest Catholic health care system.

Some ethicists are interpreting that exception strictly. The Rev. William Grogan, a key health care adviser to Cardinal Francis George and an ethicist at Provena Health, based in Mokena, said death must be expected in no more than two weeks – about the time it would take someone deprived of food and water to die.

But Joseph Piccione, senior vice president of mission and ethics at OSF Health Care in Peoria, said that if a patient knows she is dying of, say, incurable metastasized ovarian cancer but is several months from death, she can decline to have a feeding tube inserted if she anticipates significant physical or emotional distress from doing so.

A second exception has to do with bodily discomfort. If infection develops repeatedly at the site of the feeding tube, for instance, artificial nutrition and hydration can be refused or discontinued, Catholic ethicists agree.

A third exception is allowed when inserting or maintaining a feeding tube becomes “excessively burdensome” for a patient. That would apply, for instance, if a person regurgitates the food and develops pneumonia when it enters the lungs, Grogan said.

“Decisions are made case by case,” and that will continue, said Ron Hamel, senior director of ethics at the Catholic Health Association of the United States.

Of particular concern is whether Catholic medical centers will honor an advance directive stating broadly that a person does not want a feeding tube inserted.

Compassion & Choices, a group that supports the right of dying people to end their lives, suggested the potential for conflict is significant.

“Now, (Catholic) hospitals and nursing homes have no choice but to enforce Catholic doctrine universally over patient wishes,” the group’s president, Barbara Coombs Lee, wrote on her blog.

But most ethicists said they do not see a significant problem. Disagreements, they say, usually can be resolved by discussing people’s end-of-life concerns, such as fear of being abandoned, fear of living in pain or fear of becoming entirely dependent on others.

It is rare for people to be very specific about their wishes.

“I have never seen an advance directive that says, ‘If I am in a persistent vegetative state, I ask that you withdraw food and water,'” Laethem said.

“We will be very attentive to patients’ advance-care planning,” Piccione said.

That offers some solace to people like Jim Lindholm, 69, who is struggling with a recurrence of non- Hodgkin’s lymphoma and attends St. Nicholas Catholic Church in Evanston.

“If there is no hope of recovery for me, if I’ve lost my active mental life, I don’t see any reason to keep my body alive,” he said. “I would prefer to die a peaceful death.”

Lindholm speaks from deep personal experience. A dozen years ago, his father suffered a stroke and lost the ability to feed himself and speak for himself. Attempts to feed him by hand did not succeed. His advance directive was clear: no extraordinary measures.

Lindholm still struggles with it. Did his father really want to starve to death? If his mother had agreed to the feeding tube, how long might he have lived?

“We owe it to those who survive us to make it very, very clear what we mean by ‘do not resuscitate,'” Lindholm said.

Although medical institutions are legally bound to respect patients’ advance directives, exceptions exist for providers who object by reason of conscience or religious belief, said Charles Sabatino, head of the American Bar Association’s Commission on Law and Aging.

The bishops’ guidelines specify that “advance directives are to be followed, so long as they do not contradict Catholic teachings,” said John Haas, president of the National Catholic Bioethics Center. How those teachings will be interpreted has yet to be resolved.

A. This quote from Directive 58 gives the gist: “In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally. This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the ‘persistent vegetative state’) who can reasonably be expected to live indefinitely if given such care. Medically assisted nutrition and hydration become morally optional when they cannot reasonably be expected to prolong life or when they would be ‘excessively burdensome for the patient or (would) cause significant physical discomfort.'”

Q. Is this an entirely new position?

A. An earlier version of the directive, published in 2001, spoke of a “presumption” in favor of giving food and water to patients in a vegetative state; the new version speaks of an “obligation” to do so and appears to extend to patients with other chronic conditions. Precedent for the position comes from a 2004 statement from Pope John Paul II and a 2007 statement from an important advisory group at the Vatican.

Q. What inspired the change?

A. Church leaders oppose assisted suicide and euthanasia and wanted to affirm strongly that the lives of severely disabled people have value.

Q. Does it apply to Catholics only?

A. The guideline affects all patients who seek care at Catholic medical centers, regardless of their religion, said Stan Kedzior, director of mission integration at Alexian Brothers Health System.

Q. Who decides if a feeding tube is “excessively burdensome” and therefore not warranted?

A. That’s up to the patient, but it isn’t as simple as, “I don’t like it and I don’t want it.” There have to be discernible physical, emotional or financial hardships for the patient, according to Joseph Piccione of OSF Health Care. Those hardships must outweigh the potential benefits.

Q. Does this mean Catholics must pursue all medical interventions at the end of life?

A. “No. We mustn’t all die with tubes,” said John Haas of the National Catholic Bioethics Center. “The Catholic Church has never taken that position.” Church members may refuse interventions they deem excessively burdensome.

For instance, someone with advanced kidney failure is not obligated to pursue dialysis, said the Rev. William Grogan, a health care adviser to Cardinal Francis George. Someone who has lost the ability to breathe is not required to use a ventilator.

The US Conference of Catholic Bishops (USCCB), as I have written, recently mandated tube-feeding for all permanently unconscious patients in Catholic healthcare institutions. This contradicts the desires of the vast majority of Americans. The Bishops are indifferent and have decided to act as agents of the Vatican, even as they exercise enormous control over healthcare choices in America. How did they arrive at this position of arrogance?

The story of how one pope’s opinion came to control Catholic healthcare throughout America is both fascinating and scary. It is the story of debate squashed, and profound authoritarianism prevailing. The story ends with absolute obedience to the dictates of Rome by Catholic medical providers who vow to impose the pope’s dictates on Catholic and non-Catholic patients alike, even though they personally disagree with the edict.

For decades after feeding tubes became commonplace, the ethics of Catholic healthcare institutions maintained a generous and merciful position toward their use. Their position rested on a principle that one must employ ordinary means to prolong life but may forego extraordinary means in the same circumstance.

. . . the common Catholic tradition has sought to determine what benefits an intervention would provide and whether the burdens of intervention are proportionate or disproportionate to the expected benefits.

In this view, the use of a feeding tube is evaluated considering a patient’s individual views on the quality of life, burdensome medical treatment and what constitutes a faithful and devout relationship with God. Many Catholics were comfortable with the common tradition, and many Catholic ethicists comfortable allowing families to give weight to their loved one’s aversion to living in a state of suspended animation for years or decades.

Extreme pro-life Catholics, however, argued that food and water, even artificially administered, are ordinary and basic, and sustaining life itself of any quality is fundamentally beneficial. Pope John Paul II fostered the ascendancy of the pro-life movement within the Church.

Prompted by The Terri Schiavo case, the Pope sided with the picketers outside Ms. Schiavo’s hospice room, declaring that tube-feeding patients in a permanent vegetative state “always represents a natural means of preserving life, not a medical act” and should “be considered, in principle, ordinary and proportionate.”

Did the pope’s guidelines allow for the patient’s view of benefits and burdens? Some ethicists still thought yes, but a September, 2007 response from the Congregation for the Doctrine of the Faith (CDF, formerly called the Office of the Inquisition), said:

No. A patient in a ‘permanent vegetative state’ is a person with fundamental human dignity and must, therefore, receive ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means.

Why did the bishops make a nationwide rule at odds with the beliefs of many devout Catholics, with a tradition of weighing benefits and burdens on an individual basis, and with established medical practice at most Catholic institutions? My own opinion is the Vatican and the Bishops turned to serious enforcement to impose their dogma precisely because Catholic patients and practitioners were not following their extreme pro-life doctrine in private medical decisions.

In Catholicism there are three sources of truth, (or three “magisteria”): the hierarchy, the theologians, and the wisdom and experience of the laity (called in Latin sensus fidelium).

Like a three-legged stool, multiple sources of wisdom have maintained the stability of Catholic wisdom. In the feeding tube decision, I believe the honest observer would see a one-legged stool making all the decisions, and a clear victory for the hardliners.

The moderates have lost the debate, and so have we. The Vatican has cut off the two offending legs of the stool and nullified ethical consideration of individual weighing of burdens and benefits. Cardinal Rigali, chair of the Committee on Pro-Life Activities and Bishop Lori, chair of the USCCB Committee on Doctrine, in stern tones, announced as much:

Even if one judges that such a condition, when prolonged, makes survival itself a burden, such a judgment does not justify removing food and water …

Codification of the Vatican’s ruling in the Ethical and Religious Directives ties the hands of Catholic patients and families, faithful physicians, nurses and caregivers and impacts everyone under care in a Catholic healthcare institution. We must increase public awareness of the threats to their rights in Catholic institutions and take steps to stop the Vatican from unilaterally ignoring legally executed advance directives. There can be no further dissent from within the Church. Daniel Sulmasy, a Franciscan Brother, internist and ethicist at St. Vincent’s hospital in New York, sympathizes with people of deep faith who do not wish to offend God, but nevertheless are horrified at the prospect of years, or even decades, lingering in a state of mere existence, without the ability to think, feel, pray, or relate to loved ones. Fr. Sulmasy said the restrictive rule would be difficult to follow, though as “an obedient friar and physician” he would do so.

The enforcement arm of the Catholic Church has ordered feeding tubes to be inserted in all comatose and vegetative patients in Catholic institutions and maintained indefinitely. Compassion & Choices has warned of the impa How To Get Your Your Ex Boyfriend Back ct this will have on your healthcare choices. I want to make clear the sources of the outrage I expressed in my last blog.

I understand the history and spirit of sectarian health care, and I feel open and accepting of its role in America. In the 1970’s I practiced as a physician assistant in a Seventh Day Adventist healthcare system and I delivered both my children in its hospital. I truly appreciated the staff’s attitude of spiritual calling and the prayers they offered for my safety and my babies’. True, those awful soy patties from cans almost turned me away from vegetarianism for life. But it seemed to me the Adventists ranked service and humility ahead of doctrine and I never saw their religion dominate a conversation or a medical decision.

The ERD’s are different. They are all about dominance. Four aspects are especially chilling in their authoritarian pronouncement.

First, the Bishops explicitly target everyone, of every faith, with the “revealed truth” reflected in their ERD’s. The document specifically directs its mandates beyond hospital employees and Catholics, to every patient, resident or recipient of Catholic services. Everyone — Buddhist, Muslim, Jewish, Protestant or Unitarian — must obey.

Fourth, many find shocking the exaltation of suffering as “participation in the redemptive power of Christ’s passion“. And few non-Catholics find comfort in Directive #61. There we find that dying patients “experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.” Apparently the nurses are to deliver a theology lesson to patients dying in agony.

The ERD’s demonstrate that one purpose of Catholic health care is to coerce people of all faiths into following Catholic moral teachings. Employers facilitate the coercion when the only health plan they offer is Catholic. States facilitate the coercion when they approve hospital mergers rendering large geographic areas devoid of any but Catholic health care. Insurers facilitate the coercion when they fail to offer a broad choice of providers within their coverage.

My sense is the feeding tube mandate finally crossed a line, where states, employers, and insurers will no longer be willing to participate in the coercion. Personal dignity, individual right of conscience and autonomy in healthcare decisions are too important to continue to pretend Catholic healthcare is not prejudicial and discriminatory against non-Catholics.

You think you’ve done the legal paperwork to avoid becoming another Terri Schiavo, who was trapped in a hopeless vegetative state while her family argued over whether to keep her going.

You’ve specified ahead of time that you want nothing artificial to prolong your life, not even a forced-feeding tube, if doctors say you won’t recover from that state.

Don’t rest assured. If that time comes, the documents you labored over won’t count for much if you wind up in the wrong place.

More than 900 hospitals and health-care centers in the U.S. that treated 93 million patients last year are affiliated with the Catholic Church, whose American policy-making body won’t let your end-of-life wishes come true while you are in their care.

Last month the U.S. Conference of Catholic Bishops resolved what had been a debate among clerics and ethicists over the morality of artificially feeding or hydrating patients who are stuck in a vegetative state, possibly for years.

What had been a “presumption” in favor of tube feeding in 2001 became, in the revised policy, an “obligation.”

“This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the ‘persistent vegetative state’) who can reasonably be expected to live indefinitely if given such care,” the bishops announced in the latest version of their Ethical and Religious Directives for Catholic Health Care Services.

If an incapacitated patient has a living will that instructs physicians, it “should always be respected and morally complied with, unless it is contrary to Catholic moral teaching,” the bishops said.

A Big ‘Unless’

That’s a big “unless.”

If family members insist that the patient’s directive be followed, they would have to move him to another facility, according to the Reverend Thomas Weinandy, executive director of the Conference of Bishops doctrine committee.

For thousands of Americans, a Catholic hospital is the only one they have, saysCompassion and Choices, a non-profit group that advocates for the terminally ill.

Federal and state laws encourage people to think ahead of time about what medical treatment they would want, and under what circumstances, if they became incapacitated. Hospitals that accept federal funds are required to bring up the subject, and that’s when they advise incoming patients of their policies.

You can spell out your wishes in an advance directive, and you can name a health-care proxy to speak for you on such matters.

Criminal Battery

“Where you actually have a medical directive, people are constitutionally entitled to have their wishes given effect,” says Ray Madoff, a law professor at Boston College focusing on end-of-life issues.

The U.S. Supreme Court said so in the Nancy Cruzan case in 1990. But, Madoff asks, who’s going to enforce that right?

Under older case law than Cruzan, if you are given a treatment you specifically declined, it is considered criminal battery under the law. Whether that applies to tubing for food and water, which some see as too basic to human existence to be considered medical treatment, isn’t as clear.

In New York, state law requires an extra level of evidence that the patient didn’t want a feeding tube for it to be denied. An advance directive would accomplish that, and so would a health-care proxy with knowledge of the patient’s wishes.

But I digress.

Larger Issue

The conflict between patient and medical personnel speaks to a larger health-care issue that reaches beyond Catholic institutions.

The notion is growing that the institutional or individual conscience of a health professional trumps a patient’s wishes when they conflict, or at least makes them more difficult to carry out.

Health professionals have been winning ever-stronger language in state and federal laws that forbid discrimination against them if their moral or religious beliefs prevent them from assisting or performing abortion or prescribing birth control. You will find some version of it in health-care bills Congress is considering.

And while in most cases of conflict arrangements are made to transfer patients to health-care providers and professionals who will comply with their wishes, that isn’t always possible.

Critical Decisions

This tugs at a sacred tenet of American health care: that an informed and competent patient should be allowed to make critical decisions over his own body, even in advance.

Increasingly, the patient’s moral and religious convictions are taking a back seat to the beliefs of people charged with caring for their health.

So it was with the Bishops Conference, which ditched its more ambiguous stance to adopt principles taught by Pope John Paul II.

Catholic hospitals can still follow patient directives that refuse other sorts of medical treatments. The more difficult question was whether food and water are medical treatments and therefore morally optional. And what if the patient could exist for years in a vegetative state?

Or was it something so essential to a person’s humanity that it must be given to affirm the value of human life, indefinitely? Would it be euthanasia to refrain from tubing?

It would, the bishops announced.

“We believe we are upholding the dignity and value of every human life,” Weinandy said in a telephone interview.

And yet, there are others who believe their dignity requires health-care providers to abide by their wishes to keep feeding tubes out of their bodies if they have no hope of ever resuming consciousness.

At a time when the country is in desperate need to reduce health-care costs, surely we could start by agreeing that it’s a good idea for patients not to be given treatment they have specifically refused.

On November 17, 2009, with little fanfare, the United States Conference of Catholic Bishops issued a directive for Catholic health care that could bring distress and grief to hundreds of thousands of American families each year. Compassion & Choices wants you to know how this limits your healthcare choices.

That doesn’t matter. Approximately 30% of Americans receive healthcare or reside in Catholic institutions, and this edict could affect any of them.

A little known but far reaching aspect of the Church’s organizational structure requires every hospital, nursing home, assisted living center, etc., with a Catholic charter to abide by a set of rules called “Ethical and Religious Directives for Catholic Health Care Services.” The 72 directives itemize exactly how the services you receive will conform to Catholic doctrine, as promulgated by the Holy See and enforced by its Congregation for the Doctrine of the Faith (formerly known as the Holy Office of the Inquisition.)

The Bishops’ latest change to Directive #58 says everyone who needs a feeding tube to stay alive must have one surgically implanted, and must keep it indefinitely. This will apply to anyone in a permanent coma from stroke or trauma, in persistent vegetative state or with advanced dementia, having lost the ability to eat along with other sentient activity. It will apply irrespective of your religious faith, your stated wishes in an advance directive, or the instructions of your family.

The Catholic Healthcare Association was quick to point out the new Directive does not apply to patients who are actively dying. But those are not the usual recipients of feeding tubes anyway. Rest assured, it applies in all situations where we most cherish our own authority to make healthcare decisions.

Catholic hospitals probably hoped this day would never come. The Bishops put them in a real bind. Ever since Pope Benedict XVI (Formerly Joseph Cardinal Ratzinger, Prefect of the Congregation for the Doctrine of the Faith) articulated this rule during the Terri Schiavo fiasco, hospital spokespeople have held tenaciously to a balancing rationale that allowed them to honor a person’s stated wishes in these matters. Last month the Bishops pointedly dismissed the “untenable positions” of “some Catholic ethicists” and made Benedict’s strict rule official and binding. Now hospitals and nursing homes have no choice but to enforce Catholic doctrine universally over patient wishes.

What had been Directive #58’s “presumption” in favor of feeding tubes is now an “obligation” and the language about balancing is gone. Pity the poor hospital administrators. As much as they may wish to honor the advance directives of patients and the heartfelt decisions of grieving families, the Church just won’t let them do that anymore.

I know a lot of readers are incredulous. “Surely,” you think, “no sane church would force hundreds of hospitals to systematically trump established principles of patient autonomy and force disruption, adversity and grief on families.” It seems unfeeling, unethical, and hardly good for business.

Well, think again, for when it comes to settled dogma, this church does not compromise.

Let me describe a precedent, and a clue to what lies ahead for families: For decades Catholic hospitals have subjected new mothers to unnecessary inconvenience, pain and surgical risk to enforce Directive #53, which forbids sterilization. Every doctor knows the safest, most convenient time to perform an elective tubal ligation is immediately following delivery of a baby. The uterus is high and fallopian tubes readily accessible. Yet women delivering in Catholic centers who request this simple operation must recover from delivery, then submit to a second hospitalization, a second anesthetic and surgical risk and the pain of a second procedure, at a non-Catholic institution. Not to mention the cost of the second operation, routinely borne either by insurers or tax payers — that is to say, all of us.

From the Bishops’ perspective, this is a small price to pay to maintain what they call “the distinctive Catholic identity of the Church’s …health care ministry.” Central to that ministry is imposition of the Church’s “moral teaching” on all its patients.

Many of us view Catholic hierarchy as having long ago squandered any moral authority they might once have had. Church officials cannot engage in conspiracies to hide crimes of sexual molestation and protect child abusers on one hand, and on the other, presume to dictate legitimate healthcare decisions. Certainly they have no authority over decisions as central to personal dignity as whether I will accept or reject medical feeding to keep my comatose body alive. The sanctimonious audacity of these Bishops simply takes my breath away.